MitoAction Memories
Whether your loss was recent or years ago, we offer support to parents, family members and loved ones who are navigating the grief process.
The MitoAction Memories group was created to offer support for those who have lost a loved one to mitochondrialRelated to the mitochondria. disease. Whether your loss was recent or years ago, we hope to be a support to parents, family members and loved ones who are navigating the grief process. You can connect with MitoAction and others on our closed MitoAction Memories Facebook page. You can also email us at memories@mitaoction.org, whenever you need us to wrap our arms around you or your family.
Join us on our MitoAction Memories Facebook Page as we go live on the third Thursday of each month. You can participate in the support conversation or just listen in.
Light a Light for Mito
MitoAction wants to help you remember those you have lost to mitochondrial disease and ask that friends and family "Light a Light" in their memory. Please send your photos and memory wishes to us at memories@mitoaction.org.
For our loved ones we miss so dearly, we light a light and remember you.
Abigail “Abby” Renee Kasuba
Adrian Corona
Aidan Antonio Calatayud
Aiden Yong-Yeon Lee
AJ
Alex Schumacher
Alicia J. Hobley
Allen C. Edwards
Allen Cannon Edwards
Allie suffered for many years. She never stopped fighting! I also have Mito & she always thought of me before herself
So many people prayed for her. She became friends with Nurses & CNA's during her many hospital stays Most of her CNA's weren't much older than her & they became friends. I still talk to some of them 8 years later & it's nice to hear some of the happy things she said & did with them, even with a wheelchair, oxygen, IV's etc She also had many surgeries.
Unfortunately we had a tough time with the medical community. Doctor after doctor told her she had psychiatric problems & was seeking drugs. They didn't believe she was sick.
Our goal has always been to make more people in the medical community be aware of Rare Diseases, such as Mitochondrial Disease & not take away needed pain medicine & other meds needed to help function It wasn't until she went to Hospice & her organs were shutting down that some doctors that heard about it thought about how awful they treated our family
Since Allie's passing we have been doing Fundraising & Advocating for a Cure for Mito. Allie would be proud that we're teaching people what Mito is.
Our hearts are broken. We did everything we knew how to help her get diagnosed (which took several years) & treated. Unfortunately there is no treatment, or only treating the symptoms & most of the time our insurance wouldn't cover what she needed.
A few years ago MASS GENERAL HOSPITAL opened a Mito Clinic. With lots of hard work, Michael & Judi Goldberg head up the non profit, Hugs for Mito! Your donations go toward Research & Medical Necessities that go directly to a patient in need. My husband, Mike & I are proud to contribute to Hugs for Mito because we know the money donated goes right to that clinic & their patients.
Allie, we love & miss you so much. Our hearts will never heal. The only things that helps us go on is knowing you're not suffering anymore & you're with God. We will all be together again
I'll love you forever
I'll like you for always
As long as I'm living
My baby you'll be
Love Mom, Dad & Steve
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